On July 26, 2024, the HRUG regular seminar on “Care and Respect: Research on Disease Management for People Living with HIV or AIDS in China” was successfully held. The seminar was chaired by Joe Finnerty, a policy analyst of the School of Applied Social Studies of University College Cork in Ireland, and reported by Xiao Xueling, an associate professor of Xiangya School of Nursing of Central South University. Professor Peter Herrmann and Li Juan (both are researchers of CSU Human Rights Center), and Professor Mehmet Okyayuz (a political science professor of the Middle East Technical University in Turkey) participated in the discussion, and shared, reported and supplemented the corresponding views. Focusing on the prevalence of AIDS and the formulation and implementation of relevant policies, this seminar discussed in depth China’s efforts and progress in disease management of people infected with HIV or AIDS, and briefly introduced the work of their medical research team.
Associate Professor Xiao Xueling first introduced the latest data on the prevalence of AIDS in the world and China, and reviewed the evolution of China’s policy on AIDS prevention and management since 1985. She mentioned that China established a national AIDS sentinel monitoring system to carry out AIDS monitoring in 1995. In 2003, China launched the electronic AIDS infected people reporting system. According to the characteristics of different risk groups, the government has formulated and adopted corresponding policies and measures, such as the implementation of the Blood Donation Law of the People’s Republic of China in 1998 to address the risk of transmission of AIDS among plasma donors.
Associate Professor Xiao Xueling emphasized the central role of the government in expanding AIDS detection, establishing a national monitoring system and implementing the policy of “four exemptions and one care”. She pointed out that the number of newly diagnosed infections in China has increased year by year, mainly due to the expansion of the scale of AIDS testing, such as the distribution of self testing reagents. The transmission mode of AIDS virus in China has also undergone significant changes, from the early transmission of injecting drugs to the current transmission mode dominated by sexual contact. Therefore, China has gradually established a nationwide AIDS monitoring system, which is in the charge of the Chinese Center for Disease Control and Prevention Sexually Transmitted Disease of AIDS Prevention and Control Center (NCAIDS/STD), and has set up institutions at the national, provincial and regional levels. At the national level, the agency is responsible for formulating AIDS prevention and control policies and regulations and providing scientific basis; At the provincial level, institutions participate in the formulation, implementation and evaluation of the national action plans to combat AIDS; At the regional level, the agency provides technical assistance and quality control for national monitoring and laboratory testing of people with AIDS. Associate Professor Xiao Xueling also mentioned one of the most powerful policies and measures for AIDS prevention and control in China, namely the “four exemptions and one care” policy: free counseling and initial screening tests, free anti AIDS drugs, free treatment and counseling for pregnant women with AIDS to prevent mother to child transmission, free compulsory education for orphans of AIDS patients, and inclusion of people living with AIDS in the scope of government assistance to provide economic assistance and social support.
In addition, Associate Professor Xiao Xueling briefly introduced the work of her research team. The team’s research focuses on early initiation of antiretroviral therapy (ART) and explores the potential mechanisms and effects of delaying the initiation of ART. Their study finds that although the world actively promotes the early initiation of ART as a key component of AIDS care, a considerable proportion of AIDS infected people still delays the initiation of ART, with an overall combined prevalence rate of 36.1%. This has led to higher incidence rate and mortality, lower viral inhibition rate and increased risk of AIDS transmission. The team also explores potential mechanisms for delaying the initiation of ART and receives support from the National Natural Science Foundation of China. Their study explores the impact of various factors on this phenomenon, including social stigma, inadequate access to medical services, and socio-economic barriers. In addition, it points out that the willingness to treat of people living with AIDS fully plays a mediating role between their awareness of ART and the delay in starting ART.
The team’s research also explores the challenges faced by people living with AIDS in the process of disease adaptation, especially the mental health problems. She mentioned the adaptation mechanism of people living with AIDS. Their study shows that, based on the comprehensive task adaptation model, people living with AIDS can better adapt to the disease by completing a number of key tasks, including accepting the fact of the disease, adjusting their lifestyle, seeking social support, etc. Associate Professor Xiao Xueling pointed out that improving the self-efficacy of people infected with AIDS and promoting them to adopt positive coping styles are crucial to enhance the psychological adaptability of infected people, thus improving the overall quality of life. Finally, associate professor Xiao Xueling concluded that efforts are still needed to achieve the goal of ending the AIDS epidemic by 2030.
Professor Peter Herrmann asked how to promote rational methods to overcome irrational fears and discrimination in society, especially for people who are not infected but are afraid of AIDS? What measures should be taken to influence or transform social attitudes through education and lifestyle changes? Associate Professor Xiao Xueling responded that although there wasa phenomenon of “turning pale when talking about AIDS” in Chinese society in the past, the public’s awareness of AIDS has gradually improved in recent years, with the strengthening of science popularization and social education. Although the fear and discrimination against AIDS have reduced, some stigma still exists, especially in high-risk groups such as men who have sex with men. She stressed that improving the correct understanding of the AIDS in society and promoting social inclusion are crucial to the promotion of AIDS detection and treatment. At the same time, attention should be paid to the self-efficacy of infected people and the internalization of stigma.
Professor Mehmet Okyayuz asked whether the medical team has a feedback mechanism to collect prejudice and social stigma against people infected with AIDS, and how do these feedback mechanisms work? In addition, is there any cooperation between medical support activities and other civil organizations or institutions, and how are these cooperative relationships organized? Associate Professor Xiao Xueling replied that there are indeed multiple ways to collect data and integrate feedback on bias and social stigma feedback mechanisms. Firstly, the government and Chinese Center for Disease Control and Prevention (CDC) are actively paying attention to this issue. CDC collects data through evidence synthesis and obtains feedback from relevant research. What’s more, non-governmental organizations have played an important role in expanding AIDS testing among high-risk groups. The research team can obtain more direct and detailed feedback by collaborating with multiple non-governmental organizations that focus on high-risk groups. Regarding cooperation with other institutions, there are currently many organizations in China that support this group, including government agencies and non-governmental organizations. The government is gradually transferring the management of people infected with AIDS from CDC or designated AIDS clinics to the community level, treating them as chronic diseases for management. Most of the feedback at the community level comes from non-governmental organizations, which provide important support for the management of people infected with AIDS virus through regular meetings with CDC.
Associate Professor Li Juan expressed concerns about the latest report issued by the United Nations Programme on AIDS. She pointed out that international organizations call on leaders to pay more attention to the problem of AIDS and invest more resources in management. At the same time, world leaders commit to ending AIDS as a public health threat by 2030. She asked how to view the key role of the government in AIDS management, especially in the context of the current economic downturn? In addition, women and children are often the main victims of AIDS. Especially when it comes to human rights protection, this group is more vulnerable to coercion and abuse, becoming the most marginalized group. She further asked, what is the current situation in our country? Is there a significant difference in the protection of human rights among different groups? Associate Professor Xiao Xueling replied that in China, the government plays an important role in AIDS management, especially in financial support and policy formulation. The importance of government in the management of AIDS is evident, but it depends on how governments play their leading roles. With regard to the infection and human rights protection of different groups, China has significantly reduced the risk of AIDS infection among pregnant women and children through the efforts of the government. The current focus is mainly on infections transmitted through sexual activity, especially among men who have sex with men. Actually, those men face more severe social stigma.
At the end of the meeting, Professor Peter Herrmann criticized the role evolution of some non-governmental organizations in society, stating that they have gradually become large institutions and have lost their close connection with grassroots communities. He also explored the suppressive effects of developed countries on developing countries in economic and social development, as well as the impacts of this inequality on healthcare and social structures. He advocated that the real solution lies in fundamentally changing the social structure, not just improving individual behavior, so that people can better cope with the complex challenges of modern society. Associate Professor Xiao Xueling responded that in order to safeguard human rights, in addition to efforts at the individual level, more measures need to be taken at broader levels such as society and government to better address various challenges.
2024年7月26日，HRUG定期研讨会之“关爱与尊重：中国艾滋病病毒感染者或艾滋病患者疾病管理研究”主题会议顺利召开。本次会议由爱尔兰国立科克大学应用社会研究学院政策分析家Joe Finnerty主持，中南大学湘雅护理学院肖雪玲副教授汇报，中南大学人权研究中心研究员Peter Herrmann教授、土耳其中东科技大学政治学Mehmet Okyayuz教授、中南大学人权研究中心研究员黎娟副教授参加讨论并进行相应观点的分享、汇报和补充。本次讨论主要围绕艾滋病病毒的流行状况及相关政策的制定与实施，深入探讨了中国在艾滋病病毒感染者或艾滋病患者的疾病管理方面所作出的努力与取得的进展，并对其医学研究小组的工作进行了简要介绍。
肖雪玲副教授首先介绍了全球和中国艾滋病病毒流行的最新数据，回顾了自1985年以来，中国在艾滋病预防和管理方面的政策演变。她提到，1995年，我国建立了国家级艾滋病哨点监测系统，开展艾滋病监测工作。2003年，我国启动电子艾滋病病毒感染者报告系统。根据不同风险人群的特点，政府制定并采取了相应的政策措施，如1998年实施了《中华人民共和国献血法》以应对艾滋病病毒在血浆捐献者群体中的传播风险。
肖雪玲副教授重点强调了政府在扩大艾滋病病毒检测、建立全国监测系统以及实施“四免一关怀”政策中的核心作用。她指出，国内新增确诊感染者数量逐年上升，主要归因于扩大艾滋病病毒的检测规模，如自我检测试剂的发放。我国的艾滋病病毒传播模式也发生了显著变化，由早期的注射毒品传播逐渐转变为目前以性接触为主的传播方式。因此，中国逐步建立了覆盖全国的艾滋病监测系统，由中国疾病预防控制中心性病艾滋病预防控制中心负责，并在国家、省和地区三个级别设立机构。在国家层面，机构负责组织制定艾滋病防治政策法规并提供科学依据；在省级层面，机构参与国家防治艾滋病行动计划的制定、实施和评估工作；在地区层面，机构为国家对艾滋病病毒感染者的监测和实验室检测提供技术援助和质量控制。肖雪玲副教授还提到了我国艾滋病防治最有力的政策措施之一，即“四免一关怀”政策：免费提供咨询和初筛检测、免费提供抗艾滋病病毒治疗药物、免费为感染艾滋病病毒的孕妇提供预防母婴传播的治疗和咨询、为艾滋病患者的孤儿提供免费义务教育以及将生活困难的艾滋病病毒感染者纳入政府救助范围，提供经济援助和社会支持。
此外，肖雪玲副教授对其研究小组的工作进行了简要介绍。该小组的研究聚焦于早期启动抗逆转录病毒治疗（ART），并探讨了推迟启动抗逆转录病毒治疗的潜在机制及其影响。研究发现，尽管全球积极推动将尽早启动抗逆转录病毒疗法作为艾滋病病毒护理的关键组成部分，但仍有相当比例的艾滋病病毒感染者存在推迟启动抗逆转录病毒疗法的情况，总体合并流行率达36.1%。这导致了更高的发病率和死亡率、更低的病毒抑制率以及增加了艾滋病病毒传播风险。该小组还探究了推迟启动抗逆转录病毒治疗的潜在机制，并得到了国家自然科学基金的支持。研究探讨了多种因素对该现象的影响，包括社会污名、医疗服务的获取不足、社会经济障碍等。此外，研究还指出，艾滋病病毒感染者的治疗意愿在其对抗逆转录病毒疗法的认知与推迟启动抗逆转录病毒治疗之间充分发挥了中介作用。
该小组的研究还探讨了艾滋病病毒感染者在疾病适应过程中所面临的挑战，特别是心理健康问题。她提到了艾滋病感染者的适应机制，研究表明，基于综合任务适应模型，艾滋病病毒感染者可以通过完成多项关键任务以更好地适应疾病，包括接受疾病事实、调整生活方式、寻求社会支持等。肖雪玲副教授指出，提高艾滋病病毒感染者的自我效能感和促进其采取积极的应对方式，对增强感染者心理适应能力，从而改善整体生活质量至关重要。最后，肖雪玲副教授总结道，实现2030年终结艾滋病流行的目标仍需不断努力。
Peter Herrmann教授提问道，如何在社会中，特别是针对未感染但对艾滋病病毒存在恐惧的人群，推广理性的方法，以克服这种不合理的恐惧与歧视？应当采取何种措施，通过教育和改变生活方式来影响或转变社会观念？肖雪玲副教授回应道，虽然中国社会过去存在“谈艾色变”的现象，但近年来随着科普宣传和社会教育的加强，公众对艾滋病病毒的认识逐步改善。尽管社会对艾滋病病毒的恐惧与歧视有所减轻，部分污名仍然存在，特别在男男性行为者等高危群体中。她强调，增进社会对艾滋病病毒的正确认识和推动社会包容对于促进艾滋病病毒检测和治疗至关重要，同时需要关注感染者的自我效能感与污名内在化的问题。
Mehmet Okyayuz教授提问道，医疗小组是否具备收集针对艾滋病病毒感染者的偏见和社会污名的反馈机制，这些反馈机制是如何运作的？此外，医疗支持活动与其他民间组织或机构之间是否存在合作，这些合作关系是如何组织的？肖雪玲副教授回答道，关于偏见和社会污名的反馈机制，确实存在多种途径进行数据收集和反馈整合。首先，政府和疾病预防控制中心已经在积极关注这一问题。中国疾病预防控制中心通过证据综合的方法收集数据，并从相关研究中获取反馈。此外，在扩大艾滋病病毒检测方面，非政府组织在高风险人群中起到了重要作用。研究小组与多个关注高风险群体的非政府组织合作，能够获得更为直接和详细的反馈。关于与其他机构的合作，目前我国存在许多支持该群体的组织，包括政府机构和非政府组织。政府正逐步将对艾滋病病毒感染者的管理从疾病预防控制中心或指定的艾滋病诊所转移至社区层面，将其视为慢性病进行管理。而社区层级的大多数反馈来自非政府组织，这些组织通过与疾病预防控制中心的定期会议，为艾滋病病毒感染者的管理提供重要支持。
黎娟副教授对联合国艾滋病规划署最新发布的报告表示关注。她指出，国际组织呼吁各国领导人加大对艾滋病病毒问题的关注，并投入更多资源进行管理。同时，各国领导人承诺在2030年前终结艾滋病作为公共卫生威胁。她提问道，如何看待政府在艾滋病病毒管理中的关键作用，特别是在当前经济衰退背景下？此外，考虑到艾滋病病毒感染者中，女性和儿童往往成为主要受害者，特别是在涉及人权保护时，该群体更容易遭受强迫和虐待，成为最边缘化的群体。她进一步提问道，我国目前的情况如何？不同群体的人权保护情况是否存在显著差异？肖雪玲副教授回答道，在中国，政府在艾滋病病毒管理中发挥着重要作用，特别是在资金支持和政策制定方面。政府在艾滋病病毒管理中的重要性不言而喻，但这取决于各国政府如何发挥其领导作用。对于不同群体的感染和人权保护情况，中国通过政府的努力，已大幅降低了孕妇和儿童的艾滋病病毒感染风险。当前的关注点主要是通过性行为传播的感染，特别是在男男性行为者群体中，他们还面临着更为严重的社会污名。
会议最后，Peter Herrmann教授针对部分非政府组织在社会中的角色演变，批评了它们逐渐成为庞大机构，脱离了与基层群众的紧密联系。他还探讨了发达国家在经济和社会发展中对发展中国家的压制作用，以及这种不平等对医疗和社会结构的影响。他主张，真正的解决方案在于从根本上改变社会结构，而不仅仅是改善个体行为，以便人们能够更好地应对现代社会的复杂挑战。肖雪玲副教授回应道，为保障人权，除在个体层面的努力外，还需要在社会、政府等更广泛的层面上采取更多措施，以更好地应对各种挑战。
(Transcription: Xinyang, Yu; Translation: Yaxing Bai)